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Help for fellow Ag with ALS (petition not solicitation for $)

9,801 Views | 84 Replies | Last: 3 yr ago by FJB
kblake
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1:28p, 2/19/19
Howdy from Fort Worth...

A year ago, I was healthy and active and looking forward to life as an empty nester. Today I can no longer speak, I only eat via a feeding tube, can barely use my arms and hands, and frequent the ER regularly after nasty falls. Bulbar onset ALS is my new reality. There is no treatment or cure. It's a death sentence, and I have about a year left before respiratory failure takes me.

While there is no treatment available now, there are several very promising ones on the horizon that have proven to be safe but are bogged down in the lengthy and bureaucratic clinical trial process. The petition below is requesting access to these treatments under Right to Try. Those of us afflicted with this disease are facing certain death and have absolutely nothing to lose. But we need your voice.

Please take a moment to sign.

Thanks and Gig 'Em
Kyle Blake '91

Dad '54
Brother '89
Better Half '91
Daughter '21


https://petitions.whitehouse.gov/petition/als-immediately-force-fda-immediately-start-granting-right-try-approvals-potential-drugs-treat-als?fbclid=IwAR03iPeGQk28_OwPzCV0PGSbkKpe8yOnTsvxkIS3EUTMF-cZ8K58UAnhSGM

And here is a FOX story on the petition...

https://www.fox23.com/news/fox23-investigates/fox23-investigates-local-man-petitions-for-right-to-try-als-drug/922157753?fbclid=IwAR0sMdL2ktSreCZAZKnkwmtI2x_35-0e-vo1QwvUsB2VwI-NlpEqP1cekXA
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Fightin_Aggie
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1:31p, 2/19/19
AG
You are in my prayers. Signed the petition. Good Luck Sir.
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FriscoKid
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1:36p, 2/19/19
AG
I'm a huge fan of the right to try. God's strength to you brother.
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4
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1:49p, 2/19/19
AG
Signed it. God bless you, brother.
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Captain Caveman
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2:17p, 2/19/19
AG
Signed. Prayers for you.
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SA68AG
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2:36p, 2/19/19
AG
signed
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PlanoAg98
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2:42p, 2/19/19
AG
Kyle - Hope is the best drug for ALS. My dad was diagnosed 5 & 1/2 years ago. He's kept high spirits throughout the battle. He's been confined to a wheel chair for the past 2 years. Just a few months ago he began walking again with assistance and his walker. Never give up!!!
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tx1c
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2:43p, 2/19/19
AG
signed as well
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Aero95
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3:03p, 2/19/19
AG
Done! God bless you.
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dixichkn
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3:50p, 2/19/19
AG
It is signed sir. Keep battling. Our thoughts are with you
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vansprinkle
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4:08p, 2/19/19
AG
For those unfamiliar with ALS, the movie Gleason (AFR because Gleason played for the Saints with Breeze, who is one of the greatest QBs ever and grew up wanting to play for the Aggies)will get you up to speed, and bring you to tears in the process.

My wife was a nurse for Methodist in Houston on their ALS floor. She became very close to too many patients and their families and simply couldn't handle the job any longer. Of course, her best and favorite patients were always Aggies, which of course ended up being the most difficult patients to let go of.

I'll definitely pray for you, and my wife and I will be more than happy to sign the petition.

Edit: My wife opened the petition and noticed Dr. Appel listed as one of the doctors. She worked with him frequently and said he is by far one of the absolute best at what he does.
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geb83
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4:46p, 2/19/19
AG
Signed. I'm moved by your obvious strength and positive attitude . . . and my prayers are with you.
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Cancelled
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5:39p, 2/19/19
AG
Signed. **** ALS in every hole.
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Bruce Almighty
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6:43p, 2/19/19
AG
Signed
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Rock1982
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7:03p, 2/19/19
AG
Signed
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94chem
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7:16p, 2/19/19
I tried. I couldn't figure out how to sign it.
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PlanoAg98
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In reply to vansprinkle • 7:32p, 2/19/19
AG
Quote:
My wife was a nurse for Methodist in Houston on their ALS floor.
My dad gets treated for his ALS at Methodist. They love the staff there.
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Ags4DaWin
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8:01p, 2/19/19
Signed. Lou Gehrig was always my favorite player as a kid. Did many a middle school research project on him and ALS.

I am always in favor of patients being able to dictate their treatment as long as there is consent and all eyes are wide open.

God speed, sir!
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Aston 91
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8:16p, 2/19/19
AG
Signed the petition as a fellow member of the Class of '91, and will keep sending positive thoughts your way.
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txcincinnatus
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11:13p, 2/19/19
AG
Signed. I know my uncle would have wanted access to these treatments when he was battling ALS
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Aggie Joe 93
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In reply to 94chem • 1:16a, 2/20/19
AG
94chem said:
I tried. I couldn't figure out how to sign it.

Signed. You click sign now, enter your name and email. (Uncheck a "White House can send you email" option) Then click a "verify you signed" link in an email.

It's quite easy.
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PikesPeakAg
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7:54a, 2/20/19
AG
Signed. Glod Bless you and your family brother.
No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment. See full Medical Disclaimer.
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Gigem_94
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9:02a, 2/20/19
AG
I very rarely sign petitions even if I support the cause but made an exception here. Whole heartedly support this cause. Had 2 close friends lose their dad's to ALS. My prayers are with you and your family. Stay strong and keep the faith.
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DD88
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In reply to kblake • 9:16a, 2/20/19
AG
Have you tried contacting your Senators and Congressmen?

Prayers for your health and well-being.
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mjhhawk
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9:28a, 2/20/19
My signature is in. Good luck and happy thoughts for you.
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kblake
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In reply to PlanoAg98 • 9:35a, 2/20/19
PlanoAg98 said:
Kyle - Hope is the best drug for ALS. My dad was diagnosed 5 & 1/2 years ago. He's kept high spirits throughout the battle. He's been confined to a wheel chair for the past 2 years. Just a few months ago he began walking again with assistance and his walker. Never give up!!!
Couldn't have said it better. I'm rooting for your dad.
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kblake
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In reply to vansprinkle • 9:37a, 2/20/19
vansprinkle said:
For those unfamiliar with ALS, the movie Gleason (AFR because Gleason played for the Saints with Breeze, who is one of the greatest QBs ever and grew up wanting to play for the Aggies)will get you up to speed, and bring you to tears in the process.

My wife was a nurse for Methodist in Houston on their ALS floor. She became very close to too many patients and their families and simply couldn't handle the job any longer. Of course, her best and favorite patients were always Aggies, which of course ended up being the most difficult patients to let go of.

I'll definitely pray for you, and my wife and I will be more than happy to sign the petition.

Edit: My wife opened the petition and noticed Dr. Appel listed as one of the doctors. She worked with him frequently and said he is by far one of the absolute best at what he does.
I am a patient of Dr Appel.
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kblake
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In reply to Cancelled • 9:37a, 2/20/19
queso1 said:
Signed. **** ALS in every hole.
I needed this lmao
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kblake
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In reply to txcincinnatus • 9:39a, 2/20/19
txcincinnatus said:
Signed. I know my uncle would have wanted access to these treatments when he was battling ALS
I am sorry about your uncle.
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Yellerjacket
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9:39a, 2/20/19
Signed and shared on Facebook and Twitter!
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kblake
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In reply to Gigem_94 • 9:45a, 2/20/19
Gigem_94 said:
I very rarely sign petitions even if I support the cause but made an exception here. Whole heartedly support this cause. Had 2 close friends lose their dad's to ALS. My prayers are with you and your family. Stay strong and keep the faith.
I agree. I hesitated about posting and don't mind if folks decline. Thanks for making an exception in my case. The thing is...I don't know how I got sick. I have been super athletic and healthy all my life. This nonsense just happened to land on me at 49 yrs old. It could happen to any of you, so we need to prevent others from getting it.
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kblake
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In reply to DD88 • 9:46a, 2/20/19
DD88 said:
Have you tried contacting your Senators and Congressmen?

Prayers for your health and well-being.
Yes. FDA. President Trump. Even Dennis Franchione.
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kblake
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9:51a, 2/20/19
Thank you all for the assist and especially for your prayers. It means a lot to me.
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OldCorpsTerd86
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10:02a, 2/20/19
AG
Done.
Keep up the good fight my man. You are an inspiration.
I am here for the comments.
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Three Seasons
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10:25a, 2/20/19
AG
Signed. Like some of the others, I don't normally sign online petitions.

I signed this one.

ALS took the Squid (ABATT '89) from us way too soon.

Keep up the good fight!
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